21 Year Old With Pancolitis UC

My name is Kate, I’m 21, and I was diagnosed with Ulcerative Colitis in January of this year.

It started with mild symptoms, but graduated to full on debilitation. I took a form of Accutane called Sotret for my acne back in 2007-08, and with the recent commercial of the link between Accutane and Colitis, I’m pretty sure that might be the cause of my UC. But, since there is no real evidence, my doctors say it’s not conclusive. I’m currently on Lialda and I just got off of Prednisone, but my symptoms are coming back, so I called my doctor and left a message; hopefully they will get back to me today.

It started with bloody diarrhea and abdominal pains and progressed to bed ridden sadness and vomiting. I went to my doctor for the bloody diarrhea and she told me I had a simple case of digestive irregularity and suggested I take Align and eat more yogurt. When this didn’t help, I went back and she said I needed to give it more time to work. The day before Christmas I was in so much pain I crouched on the floor of my job begging my boss to let me go home. He allowed me to and I spent the next week avoiding having to stand for 8 hours a day. I went to a GI specialist, but he felt the same as my general practitioner and I didn’t believe either one. December 30th, I had my mother drive me to the hospital. I was admitted and they treated me for C. Dif, or Clostridium Difficile. I was on a medication called Flagyl for a good month at this point and they kept feeding it to me.  I was in the bathroom every hour practically spewing from both ends. I was miserable on both holidays and I was losing faith in the medical profession. I was in the hospital for 2 days and I begged them to release me because I would rather be in misery in the comfort of my own home rather than a smelly hospital with an old man screaming in the middle of the night for water. They said if I could eat lunch and keep it down, I could be released. So, to be honest, I faked it. I held it down for 2 hours and they released me. The next day, I was vomiting again and my mother asked if I wanted to go back, but I said I was feeling better, it was just going to take time to get used to the new drugs they had put me on. A week later I was back to a debilitating state, so I asked my mother to take me back to the hospital instead of starting school that day. I guess the second time in the hospital in 2 weeks makes them sit up and pay attention because they actually took some x-rays and did something instead of playing the guessing game. My doc tor this time around visited me more frequently and really paid attention to what I was saying. I had a colonoscopy and an EGD the next day and it revealed ulcers all in my colon and rectum. He diagnosed me with UC and I thought, finally an answer! Now I can live my life worry free, right? Oh, I have to take medication for the rest of my life? Just so I don’t have an episode as awful as this one again? What the hell kind of life is that? My depression has never been as low as it was between hospital visits, but it still hasn’t quite gone down to a normal amount either. I still worry incessantly about my future and how I’m going to provide for myself and this disease. Does it ever get any easier to deal with?

Medication Details:

Prednisone make you gain a few pounds. I went down to 133 pounds while I was at my sickest. I’m 5’11”, so this isn’t a healthy weight. While on prednisone, I gained all my weight back, plus about 20 pounds. I have pretty chubby cheeks to begin with, so the puffiness the prednisone gives my cheeks makes me look extra jolly.

-Kate


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6 Responses to 21 Year Old With Pancolitis UC

  1. Steph June 17, 2011 at 9:13 am #

    Holy crap, you had a rough time leading up to your diagnosis! I’m so sorry it took them so long to figure out what is wrong. I took accutane as well, in 2002-2003 and was diagnosed with UC in 2005. Have you joined any of the lawsuits? I did almost a year ago. They gathered up all my medical records, haven’t heard anything from them for a while.

    Did you ever take antibiotics for your acne? A newer theory they have is that people who take accutane are often prescribed antibiotics for their acne as well, so the cause could be antibiotics too. I know I took antibiotics.

    Nice to meet you, Kate, I’m glad you found us!

  2. SerenityNow June 17, 2011 at 5:05 pm #

    I am so sorry for what they put you through! I hope you feel better soon. As far as if you have to take meds for the rest of your life, apparently that varies from patient to patient. Take care and keep fighting for your health!!

  3. Peter NZ June 17, 2011 at 7:34 pm #

    Hi Kate,
    I had it as bad and I think I might know a little how you’re feeling.
    I got better and there is no reason you can’t also.
    What I discovered was that there is absolutely no point worrying about what might or might not happen. It is just pure supposition. You are probably better off than the old guy screaming for water too.
    Last flare I benefited from going on a liquid (fresh juiced fruit and vege diet) diet for a few weeks and then easing back into it by adding a little mashed spud etc. at a time. I’m no doctor but it helped me – there is alot of info on the web; perhaps discuss it with your doctor?
    Hang in there,
    Peter

  4. Marah June 18, 2011 at 1:53 am #

    I was diagnosed with UC when I was 20 (Feb 2010). I had the same symptoms you do but it took me about 4 months before I had a definite diagnosis. The best thing I can tell you is don’t give up hope. It might get worse before it gets better but spending time with friends and family really helps. There’s nothing worse than trying it deal with what’s going on by yourself. I had people over to my house a lot because I was so afraid to be sick in public. Don’t worry about that sort of stuff though… women are usually really understanding about really having to go to the bathroom for whatever reason it may be :) Whenever you start to feel better I suggest going out with friends to do something fun that’s not too strenuous (bowling for example). Seeing that you can still do fun things really helps take your mind off it all so your body can do its thing and work with the meds. It’ll get better.

    Don’t drop the hope!

  5. tylotyler June 18, 2011 at 5:42 pm #

    I never took accutane but i did take alot of different antibiotics for a few months for acne. I remember taking tetracycline for so long that i had to stop taking it because it was causing diarrhea. It was years ago but i still think it might have caused or contributed to my colitis. It would be interesting to see who all took alot if antibiotics and develops colitis.

  6. Jose February 11, 2012 at 12:35 am #

    I’ve been dealing with UC for 2 years now. Attained this disease right before 21 one, so i could even have my 21 drink. haha. Its a bad disease that doesn’t get easier, but you know what they say what ever doesn’t kill you makes you stronger. I was on two different long term medications that both ended with me in the hospital for pancreatitis. I opted it out western medicine to find a new route. I followed a strict diet and was doing great for 4 months with out any thing, until those holiday foods started coming in…..ooohh those holiday foods. Been in two flare ups since and back on steroids, trying to give it another shot, until i fold for remicade and turn back to western medicine. I don’t suggested you do a strict diet unless you do some research first, but i do suggest u give up all caffeine, sugar, fast food, any kind of carbonated beverage, any thing with corn syrup, alcohol, and eat a lot of veggies. It wont cure you but it will help you tremendously, and make it easier to deal with the disease. For more insight, there are many books written from people and for people dealing with the same, for example THE MAKERS DIET. Sorry to hear about your story, i know how bad it sucks, but good luck, i wish you health and i hope this little bit on information helps.

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